Pages

January 21, 2013

DANCE WITH THE DEVIL part 2 of 3

Joe, like it or not, is not one to get his panties in a bunch over life's what-if moments like his crazy pickle wrangling wife. My news was met with barely a raised eyebrow and a lackluster,"Yeah, we'll wanna look into that." Annoying? Uhm, yeah. So we waited. And waited. And waited. Remember, we're in socialized medicine land here so there was no speed dial to Dr. Cowboy with this epiphany. At our next CF clinic, which happened to be a painful three months down the pipe, I put it right out on the table for the good doctor in my Lone Ranger (it's actually more Tonto than Lone Ranger) Spanish, "There'sthiswebsiteputtogetherbytheCFFandHopkinsthatsaysthekidsmightnothaveCFwhaddyathink?"

Well, she just may have been
on to something.

And as he's so good at doing, Joe translated my babble. "What we mean is that there have been some recent publications specific to the kids' mutations and we've got some questions. I guess we just want to be sure that we're on track with their treatment plan given this news." Pretty generic, yes but probably better than the emotional babble that spewed out of my mouth. Cowboy listened, asked a bunch of questions that now, barely a year later I don't even remember and then said, "I'm glad you brought this up because I've been scratching my head over your kids for some time now. To be honest, I've never seen anything like their cases before. Here's what I want: I want a CAT scan. I want a CAT scan of each child. I want to see beyond the collection of yearly x-rays and the lab reports. I'll order it today but it won't be for a few months. You'll be assigned an appointment time for later this summer. Let's start from there and play our hand accordingly. Until then, we keep our action plan as-is: no change."I nodded, wide eyed. He didn't laugh at us or call us crazy. He didn't hmph about us being in denial. He listened. And it appeared that he too was unsettled about our Cystic Fibrosis. Maybe not as unsettled as I but unsettled enough to order a CAT scan for Charlie and another one for Lola. The can of worms had been officially opened; a lot would be riding on the results of the upcoming CAT scan, at least in my mind. If it came back clean it might mean a whole new way of approaching and ultimately managing our CF. If it came back showing evidence of the disease it would be reliving the diagmosis all over again, a chapter in our lives that I was none too keen to revisit.My walk out to the parking lot that day was both a half ton lighter and a half ton heavier. Hmph. All in the same clinic visit.